It Happened to Me: Endometriosis Is The Most Painful Thing I've Ever Experienced, And Just 8 Months After Surgery It's Already Come Back

Most days I laid in bed and suffered, convinced that either I had some kind of cancer eating me from the inside out that no doctor could find, or that they were right and there was nothing wrong with me and the pain was an invention of my twisted mind.
Publish date:
May 2, 2013
recovery, surgery, pain, grief, endometriosis

In September I had surgery to remove endometrial growths from my insides. I was told that if it ever returned, it would take 1 to 3 years.

Eight months later it’s back, and I couldn’t be more devastated.

I woke up with abdominal pain in February 2011. I called in sick to work convinced that I had either pulled a muscle, or that I was having an attack of appendicitis. I had a fever and started throwing up. I saw my doctor a few days later she said if the pain got worse it was probably my appendix and to rush to the nearest emergency room.

Two days later I was in emergency room getting shot up with morphine and scanned. The doctors found nothing wrong with my appendix but were puzzled by the amount of pain I was having. They sent me home with some Tylenol 3 and an appointment with a specialist.

Over the course of the next year I saw a gall bladder specialist, a kidney specialist a gastroenterologist, a douchebag gynecologist dude who told me “Sometimes people just have pain for no reason.” Um, I’m no doctor but that seems literally impossible.

I had ultrasounds that came back clear; I was still in pain. I had so many MRI’s that I was told giving me another one would mean I developed cancer in six years. The MRI’s came back clear. My blood work, and they drew liters, was all normal. Pap smear, normal, colonoscopy, normal. As far as the doctors were concerned, nothing was wrong with me.

On good days I could hobble to the couch and maybe check twitter, on a great day I could post a blog entry or work on an article. But most days I laid in bed and suffered, convinced that either I had some kind of cancer eating me from the inside out that no doctor could find, or that they were right and there was absolutely nothing wrong with me and I was totally batshit insane, the pain an invention of my twisted mind.

My life slipped away from me. I gave up teaching, volunteering, group therapy, art therapy, writing, reading, visiting friends, going out for coffee, spending time with my son and partner. Going for a walk became inconceivable. Being able to sit upright long enough to see friends or go to a movie became a fantasy. Having the necessary concentration and focus to answer emails or write anything longer than a text became ludicrous.

Scan after scan came back negative and in the meantime my despair grew as large as the pain until there was no difference between them, a hopelessness that gnawed at my insides, a searing certainty that stripped away my future and held me in a limbo, helpless, hating the way I felt sorry for myself, but unable to stop myself from sliding into utter despondency.

I started tracking my menstrual cycle, convinced that the gynecologist I had seen was not just an asshole, but wrong. My cycle had changed over the past couple of years, getting heavier, shorter, and more painful. I had told him the pain was more intense when I was menstruating and ovulating. He told me that was normal. I didn’t think so.

I asked my GP to send me to a different gynecologist and after six months of waiting I finally saw the only doctor who had any answers.

The new gyno spent at least an hour going through the history of my illness, looking at my record of my menstrual cycle, respectfully asking questions, clarifying answers, and then gently doing a physical exam.

Endometriosis. She said my symptoms were consistent with endometriosis but the only way to know for sure was to perform a laparoscopy, a procedure in which a small fibre optic camera is inserted into the abdomen to examine the places that CT scans, ultrasounds and X-rays can’t see. I begged them to cut me open then and there but they wanted to try me on a round of birth control for three months first before they did anything as drastic as surgery.

The birth control was a bust, turning me from a depressed, irritable bitch to a suicidally depressed, psychotically irritable bitch inside three weeks. I threw them away and went back to the specialist. She agreed finally to cut me open but made me understand they might not find anything internally wrong with me. That despite my consistent symptoms she might not find any endometriosis at all.

“But,” she added, “if there is anything in there, if I do the surgery and we see your appendix is inflamed or find anything at all the matter, I will have it taken care of right then. I will find someone to deal with it right that second. If there is something in there that shouldn’t be, it’s coming out.” I cried with relief.

During exploratory surgery, she found endometrial lesions on both ovaries, in my abdominal cavity, bowels and rectum. She explained how the endometrial cells, which normally prepare the uterus for pregnancy each month and are usually shed during menstruation, will sometimes migrate through the tiny gap between the fallopian tubes and the ovaries.

When these cells migrate they can spread throughout the body, usually centered in the abdominal cavity, but endometriosis has been found in all parts of the body, sometimes even the brain. No one is sure why these cells sometimes break away and wreak havoc in the body, but they do know that the cells are still governed by the hormones that cause normal menstruation, so that when the body is preparing to menstruate, these cells, wherever they might be, thicken and multiply as they would inside the uterus, causing incredible pain because the bloody buggery things are in the wrong fucking places.

After about a month of recovery and some sweet fucking painkillers, I was able to sit upright for a few hours at a time. I was able to go to a movie. I could answer emails, watch TV with my partner, even do regular shit like grocery shop and go to the bank. I was starting to job search and update my resume when I started bleeding.

I’m on a low dose oral hormone treatment called Visanne. It’s newly approved in Canada and is the only treatment for endometriosis. It’s supposed to stop ovulation. I guess I’m not ovulating but in December I bled for 20 days in a row. I went back to my gyno.

I have a decent tolerance to pain. I’ve had a baby, I have tattoos, I’ve had dental surgery without anesthetic because I’m crazy like that. I’m pretty good at distancing myself from pain and carrying on with what I have to do in my daily life.

The pain of endometriosis is so intolerable I would rather get tattooed on my teeth while giving birth to triplets every day of the week than endure another second of the pain of endometriosis. The pain for me is accompanied by vomiting, nausea, low grade fever, exhaustion, chills, confusion, depression, and the desperate worry that there was absolutely nothing medically wrong with me.

As for sex, it’s like being rammed in the lady parts with a burning baseball bat. I haven’t even attempted it, I’m so afraid of the pain. My gynecologist told me to start with masturbation and see how I feel. I explained to her that whenever I had an orgasm before the surgery, it felt like a charley horse in my ovaries. She’s worried that I’ve developed a psychological aversion to sex because it’s been a not fun, agonizing exercise in excruciating pain.

I feel like the worst thing that having endometriosis has done to me is to take away pleasure. I don’t drink, I don’t smoke, I don’t do drugs, it seems outrageously unfair that my body would decide I also don’t have sex and make me celibate against my will. Feeling asexual, unlovable, and undesirable for so long has done a disastrous tap dance on my self-esteem. .

As a sexual abuse/assault survivor, I have worked fucking hard all of my adult life to have a healthy outlook on sex and to enjoy it for the sweaty fun it is, and to have that taken away from me has left me very angry.

I didn’t expect surgery to be the magic bullet that solved all of my problems but I did expect the effects to last longer. I didn’t think that just eight months later I’d be back on my couch, fucked up on codeine, feeling sorry for myself and starting another round of useless scans and specialist appointments.

Tomorrow I go for a trans vaginal ultrasound. I don’t even use tampons anymore because insertion hurts so much, but tomorrow a stranger is going to probe my tender lady parts with a sonic dildo. Ordinarily that would be a good time. Now I’m fighting a panic attack.